Data sharing ethics toolkit: The Human Cell Atlas

Creators: Kirby, Emily¹; Bernier, Alexander¹; Guigó, Roderic^{2, 3}; Wold, Barbara J.⁴; Arzuaga, Fabiana⁵; Kusunose, Mayumi⁶; Zawati, Ma'n¹; Knoppers, Bartha M.¹

1. McGill University
2. Centre for Genomic Regulation
3. Pompeu Fabra University
4. California Institute of Technology
5. Interministerial Comission on Advanced Therapies Ministry of Science, Technology and Innovation -Argentina Godoy Cruz 2320. 4th Floor, Ciudad Autónoma de, Buenos Aires, Argentina
6. RIKEN

Abstract

Striving to build an exhaustive guidebook of the types and properties of human cells, the Human Cell Atlas’ (HCA) success relies on the sampling of diverse populations, developmental stages, and tissue types. Its open science philosophy preconizes the rapid, seamless sharing of data – as openly as possible. In light of the scope and ambition of such an international initiative, the HCA Ethics Working Group (EWG) has been working to build a solid foundation to address the complexities of data collection and sharing as part of Atlas development. Indeed, a particular challenge of the HCA is the diversity of sampling scenarios (e.g., living participants, deceased donors, pediatric populations, culturally diverse backgrounds, tissues from various developmental stages, etc.), and associated ethical and legal norms, which vary across countries contributing to the effort. Hence, to the extent possible, the EWG set out to provide harmonised, international and interoperable policies and tools, to guide its research community. This paper provides a high-level overview of the types of challenges and approaches proposed by the EWG.

Copyright and License

© 2024, The Author(s). This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

Acknowledgement

The co-authors wish to thank all members and observers of the Human Cell Atlas Ethics Working Group for their ongoing contributions and collaboration. B.M.K., A.B. and E.K. are funded by the Chan Zuckerberg Initiative, the Klarman Family Foundation, and a grant from The Leona M. and Harry B. Helmsley Charitable Trust to McGill University. M.Z. would like to acknowledge the contribution of FRQS through the J1 Career Award. This publication is part of the Gut Cell Atlas Crohn’s Disease Consortium funded by The Leona M. and Harry B. Helmsley Charitable Trust and is supported by a grant from Helmsley to McGill University. www.helmsleytrust.org/gut-cell-atlas/. This publication is part of the Human Cell Atlas – www.humancellatlas.org/publications/.

Contributions

E.K. drafted the original manuscript and coordinated the work of the HCA EWG. A.B. assisted in the development of tools for the EWG. R.G., B.W. and B.M.K. supervised the work and co-chaired the HCA EWG. F.A. and M.K. are members of the EWG and contributed to the development of EWG tools. M.Z. is a current co-chair (2024) of the EWG and a member of the HCA Inc. Board of Directors. B.M.K. is a member of the HCA Organising Committee. All co-authors reviewed and edited the manuscript.

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